First and last words

Where words are scarce they are seldom spent in vain,
For they breathe truth that breathe their words in pain.—William Shakespeare, Richard II, 2.1.7-8

The first time I heard someone speak about AIDS Dennis Altman was warning the audience of a conference that AIDS would become a business, providing employment for professional educators, carers, commentators, researchers, opinionists and authors. At the same conference several people noted the absence of speakers directly affected by the virus.

Later, I spent a short time writing Question and Answer advertisements for the Victorian AIDS Council (Q: Is kissing safe? A: Yes. It’s as simple as that …). I signed, like everyone else, documents (loosely) binding me to an agreement of confidentiality. One night I spoke to a man, antibody-positive, who expressed the opinion the Council’s obsession with confidentiality was at least partly responsible for the crushing vacuum formed by not being able to hear the voices of people with AIDS He acknowledged the good intention of the Council policy to protect him but added the angry footnote, “I don’t want to be protected.” No doubt the policy also exists to keep safe from those who need no protection the ones who do.

The verbal litter of the media’s coverage of AIDS issues has been to some degree corrected by the sensible and compassionate commentary of Altman and a very few others. I waited for a while to hear how creative writers and artists would speak about AIDS, and heard nothing, or so near to nothing as makes no difference. I waited, also, to see in print the record of those personal experiences which only people with AIDS can tell and, again, found almost nothing. It is obvious confidentiality is not the only agent of the silence we are in. I cannot resist the temptation to tell a simple and ineluctable truth … There are too many creative writers. Quite a few of them are gay. Hardly any of these (I’m being very generous, I think) have bothered to write anything about AIDS. Therefore, gay Australian writers are, on the whole, a bunch of fucking wimps. I feel better having said it.

Ending my own intransigence by seeking to promote the publication of whatever people with AIDS had written I found more disturbing reasons for the stifling climate. Writing requires an effort of concentration and endurance which people with AIDS often find themselves unable to afford. During periods of illness, if there is no one who can be trusted to transcribe a tape recording or to assist with the physical trouble of placing words on a piece of paper, no strength of desire can overcome the fact of physical weakness. —And when the writing is done there is no guarantee it will be published. One journal, written by a man who died of AIDS in 1987, has so far failed to be published because—the editors said—it is not very well written, and too short to stand alone. This failure makes me rigid with anger: considerations of ‘Literature’ and ‘Art’ should prevent the publication of almost everything we read these days.

Do I really need to give reasons for you to read the excerpts from James’s journal which are reproduced here? Perhaps not, but bear with me a while so I can list the most important.

First, James wished to be heard. On 29 July 1987, when it appeared his journal may have been lost, James spoke into a tape recorder recounting the anguish of a person who had been violently gagged.

“I just cannot believe what’s happened! Yesterday Wendy looked for my journal but couldn’t find it. She left and Bob rang. He said it was in the drawer. It wasn’t there. In fact it was nowhere and still hasn’t been found today. Yesterday I panicked and felt around, the nurses searched everywhere, people were phoned. It just disappeared from my room.

“I just can’t believe this. I was so upset, I’d lost a part of myself, yet how? How could it just go? Who would take it? If someone came in, why would they take that? Wouldn’t they take my walkman? What if it got caught up in the linen? Where the hell is it? I felt bad enough before this; I was agitated, angry. I’d just been here so long, felt I couldn’t stand it, was upset. It was all getting to me: the hospital, drips, needles, tests, people in and out, noise-just too much! Then yesterday stretched it so far I’d thought I’d snap, even if they just wanted to take my temp. I didn’t think I could stand even that.”

Second, recording the ordinary facts of his own illness and death, James shows how unnecessary and wasteful ‘good writing’ is: lying requires an effort of will which the very ill are not likely to squander.

Third, I am showing only those parts of the journal which refer to James’s eyes so we can think, as we read, about how lucky we are; and to remind us that, by reading, we can silently agree James’s work was valuable and is not wasted on us.

May 24

My left eye is causing me some concern. Maybe I am worrying too much, as usual. It’s just that I’m scared it’s getting worse. I close my right eye, using only my left and it seems I can only see half of what I should see. I can see directly ahead but not below the centre or to the left side unless I move my eye right around and then I can still only see what I am looking at. So, if I look left I can’t see straight ahead. The same if I look right.

It is scary because it really does seem worse. And if it gets any worse than this it will really affect my day-to-day life. If unable to drive, I’d lose a lot of my independence. No—I just couldn’t stand it …

June 4

Bob told me some strange news yesterday. He said that a Scottish vet had found a vaccine that kills the AIDS virus in monkeys—that there was a vaccine against it, but they hadn’t tried it on humans. It hit me very hard. Imagine the impact that news like that would have on me. And to make matters worse, we didn’t know any more than that. Could it ever be used on humans? Did it just prevent you from getting AIDS or could it be used on people who already have AIDS? There were no details, other than it worked on monkeys. And monkeys being so similar to man, it created a real possibility of hope.

My head spun with a hundred questions and no answers. Emotionally, I was stuck in limbo. I felt like crying, laughing, yelling, but I couldn’t. Because I didn’t know enough to know how to feel. We didn’t know for sure. But there was hope, a new hope!

Bob heard it on the news, so we thought that more information would be gained on the news that night. I looked at all the evening news shows and there was nothing! Not one mention! I couldn’t understand it. We both couldn’t. By then I was OK and wasn’t really thinking too much about it. I was thrown into such a state that my brain switched off to stop the torment of all these questions without answers.

And my left eye is getting worse. When I use only the left one, the lower right corner is distorted. So if I look at the TV with the left eye, the bottom corner bends upwards. And I’ve had double vision, too. Before I could just hope it would get better. Now it’s painfully obvious that it won’t. But still I don’t think about it if I can help it, which is almost impossible because I use my eyes all the time. I can’t think of ifs and buts and what-ifs, because I don’t really know what’s going on. I only know I see less: this flat, all of a sudden, seems so much darker, and I can’t drive at night and even walking outside at night is very difficult. I could have cried a few times this week, but it just didn’t come out …

June 12

But the hardest part of it is that I am finding it more difficult to do things and if it gets worse then things become even harder. I lose so much independence, constantly in need of help. What about reading and writing? And driving and going where I want to go when I want to go?…

I try too much not to walk into things, so what happens? I walk into things. So I got out of there as quickly as possible and came home …

June 16

Things haven’t improved in the last few days. In fact things have become much worse. Even writing this is most difficult. My eyes have deteriorated in the past week and even more in the past two days. I’ve also not been feeling very well for most of the past ten days or so, although today I feel good again physically …

Since Sunday my right eye has become fuzzy, making it very hard to read, write and drive …

Today I was wiping the bench and I double checked that it was clear of anything. I moved my arm across and knocked a glass across the room. I even made sure to check. The glass was right under my nose and I couldn’t see it. I can’t see anything down there. Anyone would have seen it. It’s been a pretty lousy few days …

June 25

When they went bad all of a sudden, over just a couple of days, it really scared me. I just hoped and hoped that it wouldn’t keep going the way it was. I guess I could say it’s been the worst few weeks I can remember …

I was convinced I had to feel bad about my eyesight, I mean angry and I should cry and throw things a lot. But now I see where I was going wrong. I wasn’t following how I felt. I was reacting in a way I thought I should, how I’d be expected to react in other people’s eyes.

So I guess Bob was right. The decision not to drive was the acceptance by me of the condition of my eyes …

July 3

I saw my doctor who suggested a new drug I could try if I wanted to. The only thing is it may do nothing. It may improve my eyes and it might have side effects. I said, “Yes, of course, I’ll try it.” I felt I had to try …

And the theatre was so dark! I just had to go very slowly and hang on to Bob. I’ve not had to hold on to someone before and that was hard to cope with too …

I was admitted into hospital for the new drug Phoscarnate.1 It is a new drug from Sweden, with no guarantees, but it could improve my eyes. There is a very small chance of some side effects. Hallucinations, anaemia, headache, epileptic fits, and a few I can’t remember, but really they were such rare occurrences, like 2 or 3 per cent.

When I arrived on the ward, no one knew exactly why I was there. Oh, but I did of course! Someone said was my DHPG2 ready? And I had to tell them, “No, I don’t have that any more.” They said I should go to my room and settle in and all will be sorted out. I asked the nurse who took me, “Why am I here?” She said the doctor probably wanted to keep an eye on the cough I’d been telling them about for six weeks. I said, two weeks is a long time for a check up, that I was here for a new drug to try on my eyes. Oh, says she, I’ll go and check. Nurse returns: Yes, you are here for that. Patient, who knows nothing, says: Yes, I had already told you all that! I knew why I was there, no one else did and when I tell them they check, come back and tell me why I’m here. But I’m the patient and they are probably embarrassed because they didn’t know. Oh yeh, they’d also lost my file. Probably why no one knew what the hell was going on. It was all a bit of a joke, really.

The drug didn’t arrive on Monday. They said Tuesday, but Tuesday comes and the drug didn’t. They now say Wednesday! I am handling being in hospital, it is a nice rest, I eat well when I can (I’ve seen the dietician about eating only what I want) and it’s warm. But I was getting agitated about being there for no apparent reason. But as always there was a reason for me, I thought, and the reason for this also caused me more worry and agitation.

Thursday—no drug.

It’s Friday, here I am and so is the drug. I am apprehensive, hopeful, determined, a bit unsure of its effects, all sorts of feelings. They want me now, to plug it in!

July 16

Today they told me the heart problem was probably due to the same CMV in my eyes. I seem to get worse: like 39° temps, not being able to eat, vomiting.

I was on the Phoscarnate for one week, and they took me off because it was affecting my renal functions and they’ve put me back on the DHPG with a much higher dose. What’s going to happen in the next few weeks? Well, nobody knows. The only good thing that came out of it was that I might be home in a week.

July 20

Lunch was lovely but the whole experience wasn’t easy. Last time I was in that restaurant, I could see the beautiful room. This time I couldn’t see any of it, and Bob had to cut my food. I’ll have to adjust.

I did something so stupid, walking from the cinema to the restaurant. I put in more of a limp than I already had, because I was holding on to Bob and I didn’t want people to think we were ‘together.’ Afraid of comments!! I felt a right idiot afterwards, when I thought about it. People that I couldn’t see and never would again, who cares about them? I shouldn’t, but today, well, I just got silly for a while …

July 21

The eye specialist came and said the number of white spots in my eyes had decreased. Good news for once. But he was concerned about my central vision: that the white area could spread to the centre, even though the number of spots is decreasing. That danger has always been there anyway. They just will NOT grow there, they just CANNOT and I’m bloody determined they won’t. The main thing was that they decreased—so why should they grow any more? They will not! They will GO! He left his report, the doctors are keeping me on medication. It seems obvious to me, seeing as it’s helping …

August 18

I guess I couldn’t be bothered, I wasn’t interested and I just can’t write any more. That’s why it’s on tape and Wendy is copying it into the journal, which I guess is basically the same thing. I’m not writing it, but they’re still my thoughts and words …

August 10

(By this time James was using a tape-machine to record his thoughts. The tapes were later transcribed to the journal by Bob and Wendy. In these tape recordings James often recalls the events of previous weeks, explaining the confusion of chronology in these entries.)

But yeh, I guess I’ve got something to complain about: who wouldn’t get angry, depressed, complain if their eyesight were just slowly going and if their life-span wasn’t expected to be long?

August 12

I was talking to my doctor, the day before, and I was telling her that I was thinking of getting a white stick, so if I was ever walking through the streets with someone and I bumped into someone, they would know that it’s because I can’t see very well. Maybe I wouldn’t get abused and if I had the stick people would move away and let me through. I’d have someone with me, of course, I couldn’t do it by myself.

She said that was a good idea and later that day the physiotherapist comes in and gives me a walking stick! I was quite annoyed really, that they just told this girl, “Give him that”, and hadn’t bothered to talk to me about it. I was just a patient. So then I thought, what the hell … If nothing else it might be a nice prop. But that’s just it. I was talking to my doctor about a white cane and somehow or other it ended up being a walking stick.

August 14

I believe my eyes are getting worse, I don’t think it’s working so why have the drug. It seems harder sometimes, to have my eyes deteriorating than it would be if I just couldn’t see. I would just have to get used to it, then and there and get on with it! But then I can see things close to me, like an ashtray, cigarettes or a cup: if I look around on the coffee table, I can find them. I should be grateful that I can still do those things and see. But I’m so fed up and angry, I’ve been so depressed. It’s no wonder I want to forget the drug, forget the hospital …

August 22

I think it’s going to be OK. I think everything is just going to be OK. I feel good and I feel less weight on my shoulders. I feel better within myself. It’s going to be OK!

…

At this point the tape-machine James was using jammed.

It is, I think, wrong to assume James’s last, hopeful remarks are an hallucination. Having, in the end, more conviction than most in the truth of his unusual spiritual beliefs, he refers to the future of his soul, not his body.

Wendy said of James’s last month that “Slowly, he retreated into his inner world and conversation with others became more limited. However, he would still assure us that he knew what was happening, even when he seemed to be asleep.”

A few days before his death, having already survived several weeks longer than some people expected he would, James appeared one night in Wendy’s dreaming. He was healthy, beautiful, and clear—the picture of his former and future self. In the dream they worked together in a field planting onions.